Hello, newly diagnosed MDS

[Jutta H]

I was diagnosed with MDS in February and in March found out that I was RAEB 1 (2), 10 % blasts. low on neutrophiles (0.5) Reds and plateletts were normal . Since then on my monthly checkups i vary between .4 and .5 . I am not qualified for BMT because of my age (68). I am on wait and watch until I eventually go over to AML which may come next month or in 5 years time I am told. Any others out there on no meds and just waiting?

[Cheryl C]

Yep! My neut average is similar to yours, and my red cells and platelets are lower than normal, but not low enough to cause concern. However my blasts are currently <5% (unless something's changed since Feb). Are you subject to certain types of infections? or do you keep fairly well?

I have the impression that MDS with low white cells as the main issue is easier to manage than MDS with low red cells or platelets because one is not needing transfusions with the associated iron overload problems. There are things we can do to avoid infections.

Have you had your globulins checked? I think the gamma globulin infusions help my immune system even though they don't change my level of white cells and neutrophils.

All the best and may God bless and guide you. I can relate to how you must be feeling. Please learn as much as you can and try not to freak out at lifespans, because average means that lots of people are doing better than that!

[Jutta H]

Hi Cheryl C,

I have just had a week of holidays and have had to rest.
I have no idea what my globulins are - the doctor just keeps telling me that my neutrophils are keeping a stable count between 0.4 and 0.5. and to live normally. No extra precautions other than wash fruits and handsand don't go on a cruise?
I don't have any infections - that is what I don't understand. I have not had the flu for 30 years, no bladder infections, no sinus problems, no problems with my lungs - or are all of these yet to come as my counts drop? This watch and wait monitoring is nerve wracking right now, but I guess one learns to live with it. And yes, all this prognosis stuff is unnerving - and the doctor is evasive. The thougth of progressing to AML is scary.
Thank you for your warm thoughts.

Best regards

[Cheryl C]

Sounds as though you're managing really well with your low neuts. The main thing is to hope that your blasts don't increase. My age is similar to yours (nearly 67).

I am prone to infections but manage to avoid most of them by keeping off products containing cane sugar, using cranberry capsules as soon as I get symptoms of a UTI and getting into the Echinaea and garlic when I feel a sore throat starting. Skin infections are fairly easy to deal with. Exercise is important. I also find that finishing off my shower with cold gives me a kick start for the day (don't do that if I'm showering at night though).

Try not to stress. Stress can make your white cell count drop. I look forward to hearing how you are going. There are so many knowledgeable people on this forum to give good advice when things look gloomy.

Please ask your doctor next time you visit how your globulin levels are.

[Bambam]

I was MDS RAEB 1 and was watch and wait for one year before it changed to AML. Once that happened, I was admitted, central line and other work ups, before starting chemo two days later. It might be a good idea to read about the CPX 351 trial to see if you might qualify in the event your MDS changes. I hope that you will be watch and wait for many years. Kind regards.

Originally Posted by Jutta H

I was diagnosed with MDS in February and in March found out that I was RAEB 1 (2), 10 % blasts. low on neutrophiles (0.5) Reds and plateletts were normal . Since then on my monthly checkups i vary between .4 and .5 . I am not qualified for BMT because of my age (68). I am on wait and watch until I eventually go over to AML which may come next month or in 5 years time I am told. Any others out there on no meds and just waiting?